Hi,
My mother is completing 1L FOLFIRNOX ceremony for metastatic pancreatic cancer, 12th cycle to be completed in December. Interim CT scan after 6 cycles showed marginal decrease / stable disease, with a strong drop in CA19.9 (85% from baseline)
She is keen to do Germline testing.
We believe she meets the NHS England eligibility criteria for germline genomic testing under the National Genomic Test Directory (test code R367 – Inherited pancreatic cancer). According to the directory, testing is indicated for “any individual with pancreatic adenocarcinoma who has a first-degree or second-degree relative with breast, ovarian, pancreatic or melanoma cancer.”
She has a positive family history, with a sister and a niece who have had breast cancer. The relevant gene panel includes BRCA1, BRCA2, PALB2, and CDKN2A, and testing can be ordered through the East GLH using the standard GMS request form. Full details are available on the NHS England website: https://www.england.nhs.uk/publication/national-genomic-test-directories/.
Oncologist is new to NHS system / we don't feel fully heard / or it is moving very, very, very slowly.
Does anyone have any advice on how I can move this forward?
Is possible perhaps to do the testing privately? If so, how? Which test?
Would really appreciate any help with this.
Given her chemo finishes soon, understanding genetics and trials (or at least attempting to) - may potentially expand options after 1L
Thank you so much,
R
Hi RobH1057c284f and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
If you don't get any replies here, it might be an idea to also join and post in the pancreatic cancer group to see if anyone there has been tested. If this is something that you'd like to do, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
While you're waiting for replies, it would be great if you could put something about your mother's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
